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Breaking through the looking glass

Navigating lung cancer and reclaiming life

For Debbie Lefebre, being told she had cancer was like becoming Alice and stepping through the looking glass.

“Everything is upended suddenly and it’s very frightening and overwhelming.”

After feeling unwell and experiencing pain in her chest area for nearly six months, in June 2012 Lefebre was diagnosed with a Pancoast tumour – a rare form of lung cancer. The tumour was sitting on the outside of her left lung and stretched across to her spine.

Her thoracic surgeon at London Health Sciences Centre (LHSC), Dr. Dalilah Fortin, explained that the next steps for Lefebre would be to undergo an extensive assortment of tests and procedures to identify how much cancer there was and exactly where it was located so that an appropriate treatment plan could be put into place. “This was really my first introduction to the cancer system and I saw very quickly how overwhelming it was to keep track of things when you’re not only feeling unwell, but are also under stress from the fear and anxiety of what’s going on. It would be very easy to get lost along the way.”

Sue Stein helps lung cancer patients manage this in-between period. A nurse navigator with LHSC and the South West Regional Cancer Program (SWRCP), Stein follows 50 to 60 suspected lung cancer patients at any given time and Lefebre considers herself very fortunate to have been one of them.

“With Sue it wasn’t just about appointments or record keeping – although that was helpful,” says Lefebre. “It was all of the extras that went along with that. She was patient and would anticipate questions before I asked them. She had the clinical expertise to help prepare me for what to expect at each particular test and would also explain things like how I would feel after. I always felt like I was a whole person around Sue and never felt like a chess piece that she was moving around from one test to the next. For me, she was a guardian angel during a very difficult time.”

Once the month of diagnostic testing was complete and her cancer properly scoped and staged, Dr. Fortin referred Lefebre to Dr. Mark Vincent, a medical oncologist at LHSC for the next stages of treatment.

Under the care of Dr. Vincent who was assisted by family physician Dr. Katriona Drosdewich, Lefebre would receive chemotherapy and later, radiation treatments at LHSC’s London Regional Cancer Program (LRCP). It was their ultimate hope that the four month treatment plan would shrink the tumour enough to make her a candidate for surgery.

In November 2012 Lefebre completed her cancer treatments and was referred back to Dr. Fortin who, along with LHSC’s chief of the division of thoracic surgery, Dr. Richard Inculet, would determine whether or not it would now be possible to surgically remove the tumour and with it any remaining cancer. Anticipating that surgery was the next step in the plan, it was a great surprise to Lefebre when Dr. Fortin delivered the news that not only had the tumour responded to treatment, all follow-up scans showed that no cancer cells were present.

“I had steeled myself for undergoing a major surgery, assuming it would be the last necessary step in my own personal salvation – that it would be the only way to get rid of the cancer for good,” says Lefebre. “So you can imagine my surprise when I was told I wouldn’t need to have the surgery because despite the odds, the initial chemotherapy and radiation had been extremely effective.”

The outcome was also a great blessing for Lefebre as her treatment had left scar tissue, a common side effect of radiation therapy, which would have made a successful surgery difficult. Today Lefebre continues follow-up monitoring at LRCP with Dr. Vincent every three months to ensure the cancer has not returned.

“While I know that I’m not necessarily cured yet, I also know that I probably wouldn’t have survived beyond February without the support and treatment that I received from my doctors, the fabulous nurses in the chemotherapy suite and my family, friends and Sue,” says Lefebre. “I’m still on the road to recovery from treatment, but I can honestly say I feel like I’ve been able to reclaim my life. I’m looking forward to the next few months when I’ll be busy with my work in wildlife rehabilitation and just getting back to doing the things I’ve always enjoyed doing.”

How the nurse navigator role helps lung cancer patientsAs a level one thoracic centre, London Health Sciences Centre (LHSC) receives a large volume of patient referrals that are based on suspicion of lung cancer. LHSC’s thoracic surgeons will then refer appropriate patients to Stein.

The role of the nurse navigator is to help expedite these patients through the diagnostic testing process that takes place between the initial suspicion of cancer and the full diagnosis; ultimately getting lung cancer patients to the London Regional Cancer Program (LRCP) for treatment as quickly as possible. The scope of work includes:

Organizing diagnostic tests

Providing psychosocial support

Liaising with family members if requested by the patient

Explaining clinical procedures to patients before their appointments

Monitoring test results for any unusual findings that should be flagged, booking further testing as required

It is a role to which Sue Stein brings 32 years of experience as a registered nurse. Essentially, Stein supports LHSC’s thoracic program and helps to bridge the gap between surgeons and their lung cancer patients, increasing the overall efficiency of the system and streamlining the patient care experience.

Stein helps to make sure that system resources are used as effectively as possible by ensuring that patients receive the tests they require, in the correct order, in a convenient and timely manner. Stein also books testing at centres closer to the patient’s home when possible, which reduces the need for regional patients to travel to London and helps to alleviate burden on London’s diagnostic units.

As well, Stein works to ensure that patients feel fully informed and understand each step of the process and what to expect next. Ultimately, her role helps to make the difficult journey as smooth as possible for patients.

“I feel privileged to have a job where I get to meet inspiring people and become a small part of their life stories,” says Stein. “Because of the nature of my work I often almost become like an extension of their family, which to me is really special. The relationships I form with patients frequently extend beyond their hospital stay and recovery.”

Stein’s work as a nurse navigator at a glance:

Supports approximately 400 lung cancer patients each year

Supports 50-60 patients who are undergoing testing at any given time with another 20-25 others who have completed chemotherapy and/or radiation treatment and are waiting for surgery

Lung cancer facts

Lung cancer is the leading cause of cancer death in the world. At present, one in 12 Canadians will receive a lung cancer diagnosis in his or her lifetime.

Smoking and lung cancerWhile tobacco smoking causes most lung cancers, about 15 per cent of patients who are diagnosed have never smoked and another 35 per cent are former smokers who quit long ago.

Women and lung cancerThere are important differences to note between men and women with respect to lung cancer:

Women are 1.5 times more likely than men to develop lung cancer

Women who never smoked are more likely to develop lung cancer than men who have never smoked

Researchers are finding that the effects of tobacco seem to be far more damaging to women than men

Lung cancer kills more women than any other cancer

Over the last 30 years, lung cancer has increased in young women and decreased in young men ages 20-44

ScreeningThe majority of lung cancers are detected at an advanced stage when they have a very poor prognosis. Currently there is no set provincial screening strategy for lung cancer, although screening with low-dose spiral CT computed tomography (LDCT) scans has been shown to decrease the risk of dying from lung cancer in heavy smokers.

In Ontario the proposed recommendation is to screen high-risk individuals (those who had smoked at least one pack of cigarettes per day for 30 years or more) who are between the ages of 55-74 with LDCT.

Supporting patients undergoing treatment for all types of cancer

Our community shows its support for patients and families undergoing treatment for all types of cancer by contributing to the London Regional Cancer Program (LRCP) Patient Assistance Program through London Health Sciences Foundation.

This program – comprised of the Gene Goodreau Patient Assistance Fund, the Massel-Cruickshank Breast Cancer Patient Assistance Fund, and the CIBC Access Cancer Therapies Now (CIBC ACT Now) – helps patients experiencing financial hardship to pay for illness- and treatment-related expenses. The funding makes a notable difference in the lives of cancer patients, reducing stress and anxiety, and allows them to focus their energy on healing.